Excruciating Pain: A Personal Fight With the Enigmatic Pain of Cluster Headaches

It was a gloomy Monday morning in September 2016. I worked as a teacher, attempting to manage a new class, when a intense sensation sprang behind my one eye. It was followed by rapid jolts, like electric shocks. As each class came and went, the pain eased and then returned with increased force. Four times that day I left a colleague with activities and ran to the staff bathroom to soak my face with cool water. I tried aspirin, but the agony remained unrelenting.

The attacks appeared frequently that autumn, and again in spring, soon forming an annual pattern. The autumn months were the most severe, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early pangs on the commute, full-on agony in the classroom by mid-morning. In late 2019, a GP eventually sent me to a specialist and I was given a diagnosis with cluster headache disorder.

This condition often start with severe discomfort behind a single eye that persists for three hours.

About one in 1,000 people are affected by the condition, and men are more often diagnosed. Attacks typically begin with abrupt, excruciating pain focused on one eye that reaches its peak within minutes and lasts for up to three hours. Attacks occur in cycles, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. I have the episodic form, which arrives in seasonal bouts; some patients have continuous cluster headaches, characterized by the absence of extended pain-free periods.

What connects patients is the intensity. One research paper scored the sensation at 9.7 10, more severe than broken bones or other conditions. Another discovered 64% of cluster headache patients reported suicidal thoughts amid bouts; the number dropped to four percent when they were pain-free.

One patient, in her seventies, a chronic patient from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would throw myself on the ground and bang my head. That was put down to being a difficult child,” she says. Her symptoms deteriorated through childhood. Drinking in her teens, similar to several triggers, made things worse. After having sherry at her school leaving party, she remembers hardly being able to see on the transport home.

Her family often interpreted her episodes as drunken behavior. Support finally came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found clerical work after moving, but often concealed her illness. She was fired from one job, partly due to absences during episodes. Her definitive diagnosis came in 2002 at a specialist neurology center.

Still, the inability to organize life around unpredictable attacks took its effect. She especially hated being unable to plan outings, being seen as unreliable as a co-worker, and even having to be cared for by her family during the incapacitation caused by the most severe episodes. “It robs you of the simple liberties we don't value until they're gone,” she says. She recalls winning tickets for a major concert, only to have an attack inside a portable toilet.

Headaches have been described across the ages. “The first description of headache originates from the Mesopotamians in antiquity,” write experts in a book on the subject. They linked the ailment to an malevolent spirit who afflicted his sufferers' heads.

Historical healing texts suggest unusual remedies for what some observers would describe as a migraine. In the middle ages, migraine was recognised as a distinct condition, with treatments including bloodletting to other, more superstitious remedies.

It was a European doctor who provided the initial comprehensive account of a cluster-type attack. In his writings, he describes a patient “suffering with a very severe headache happening and disappearing daily at specific hours”.

Cluster headaches were only formally recognised by global medical societies in the late 1980s. From the mid-20th century to the late 1990s, they were believed to be caused by a issue with a major artery that supplies blood to the head. Leading experts in diagnosing the disorder note this.

In 1998, scientists released the findings of a research project for which they had triggered attacks in patients and observed the attacks in a imaging machine. The results, published in a major medical publication, showed activation of the hypothalamus, which is in charge for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they felt better.

In spite of such advances, diagnosis remains delayed. One man's attacks started in the 1980s and felt like “a balloon being inflated behind my left eye”. Doctors thought he had sinus problems; he underwent multiple surgeries before eventually being correctly identified in 2014, after a doctor looked up his complaints.

Neurologists say wait times in diagnosing and treatment happen because patients are rarely seen during an episode. “You're exhausted and low, but not in severe pain,” one says. He proceeds by ruling out other primary head pain disorders, such as migraine, before confirming the disorder. A thorough patient history is essential: on which side do symptoms occur? For how long? What time of year? Are there precipitating factors, such as certain foods? Specific features such as redness, sagging eyelids and nasal congestion help verify cluster headaches. Once identified, patients may be referred to specialist clinics. But many first arrive to A&E or are given inadequate treatments.

A charity trustee, in her late seventies, has experienced the condition for the majority of her adult life, although she hasn't had an attack since 2016. When she was in her 20s, she had her molars pulled because dentists misinterpreted her symptoms. She believes dentists still need greater education. When a sufferer sought help from a support group, it was Chapman who responded. I remember calling a helpline during an bout in 2021; a calm volunteer talked me through oxygen therapy and medication until the attack eased.

Official guidance on management recommend that sufferers are offered high-dose oxygen therapy and/or a specific drug administered by injection. No tablets or strong analgesics should be used. Preventive options include verapamil, which reportedly soothes the attacks of some individuals.

But leading neurologists believe the official guidelines need updating to reflect a more defined clinical pathway and help GPs avoid incorrect prescriptions. For episodic patients, timing is everything: “The duration of the bout dictates the approach.” Short bouts with infrequent attacks are handled with abortive treatment alone. More prolonged or more severe bouts require preventives such as certain drugs, sometimes paired with steroids. A significant number of patients also receive a greater occipital nerve block during a bout – an injection into the area of the head where the pain is that decreases nerve signals.

The official guidance need revising to reflect a